Too Much Information

To mark the end of World Autism Awareness Week, Beatrix, my amazing autistic 8 year old daughter, would like to share her personal experiences of Asperger’s. She would really like to make a difference, to make her own little mark on the internet, so please share…

To some of us autistic people it’s like a big dangerous world out there that we just don’t understand: having Asperger’s is like constantly having a heart attack that can’t kill you.

Walking into a room full of people is like trying to look into the sun. I would just have to walk out, I wouldn’t be able to bear it. Being in a busy place is really hard, I probably wouldn’t be able to cope, people are zooming fast and coming out at you all the time. I have to try to keep myself hidden.

I don’t like to be looked at a lot of the time, for me that feels like it’s rude. I like to be hidden because I feel like lots of people stare at me and it makes me feel worried.

If there is a loud noise, it feels like a big boom that can kill you. I also don’t like super-quiet noises because it feels like a really terrible thing, it tickles in an unpleasant way. I’ve super-sensitive hearing so when there are tannoy-type announcements (at the supermarket or at the train station), it is really scary and hurts my ears. I am always very scared that a fire alarm or a siren might go off.

When people touch me, it feels like a spider or something else that you are absolutely afraid of and it makes you go crazy, it’s just a horrible, horrible feeling and people need to respect that and it’s one of the things that they don’t. They think I’m the mean one. I can’t go into a lot of shops and restaurants because they smell too strong and because the waiters and assistants come up too close so I don’t want to look at them but I know they think I’m rude so I have to try and suffer it.

If there’s a weird texture it can make me feel sick or crazy, it can make me do something that wouldn’t be “normal” like wriggling my arms or jerking about because it makes me feel like I need to make my actual bones shake, to get air onto me, and to get rid of the bad feeling as quickly as I can. Sometimes I have to scratch feelings off my skin. I can see how things feel, it sounds crazy but it’s true. For example, I don’t like carrier bags for how they feel so I can’t even see one without feeling sick and angry.

Sometimes if there are too many things going on at once I can feel crazy and act mad like a dog or a cat or something… I can make noises to make myself feel better as I feel more in control but that makes people look at me and that makes me feel worse.

For me, a surprise can make me rage. Even tiny things can make me really badly cry. Sometimes I feel like my body has a mind of its own. Something happening suddenly that I can’t immediately explain can make me run away, even if I might be putting myself in danger. If I have been out somewhere, I might need to spend a couple of days in bed to try and recover and get my sensories under control.

Some people think that because some autistic people don’t wear clothes, or wear ear defenders, they think it’s rude or annoying and bad and think we’re bad people or we have bad parents but that’s just not true. For example, I like to stick my tongue out because it feels really good, I’m not being rude.

BUT IT’S NOT A THING THAT NEEDS TO BE FIXED, NO ONE SHOULD BE ASHAMED OF ME OR ANYONE LIKE ME, I’M JUST ME.

US readers: please note that autistic people would like you to Boycott Autism Speaks and choose not to “Light It Up Blue” in April. Autism Speaks spends 12% of budget on autism prevention research (eugenics) and only 4% on support for autistics. For more info and how you can truly contribute to create a world where neurodiversity is accepted, then check out the Twitter hashtag #RedInstead. where you’ll find amazing #ActuallyAutistic adults to follow… Thank you.

No thanks necessary. This post is for your daughter…..I happen to think you are absolutely perfect the way you are. Can you imagine a world where we were all the same? BORING! I like sticking my tongue 👅 out it feels great and I dare everyone to try it before they say anything. Some people seriously need to lighten up, try dancing in the rain, the rain feels great on your tongue 😉 I know I do it all the time, and you’re so right some fabrics feel horrible and should be made a crime against humanity, I have hundreds of blankets because I like the feel of them. I like soft fabrics not horrible itchy ones…yuck! Sometimes people and shops get to annoying so I go outside. The music, the lights, the noise ugh I just want to scream at them all to just shut up. People can be very annoying. Personally I think you’re amazing and don’t let anyone tell you otherwise!! Now if your mum would just tell us the name of her other blog, I’d be very happy 😊 xox love someone who believes in you xox ❤️

An 8yo just summed up so many of the things I’ve struggled with my whole life. At 38 years old, I still fight to explain ‘me’ to others and have to work very hard at keeping negative thoughts away. Thank you for your helpful words 🙂

Your poem “I stand quietly by” popped up in my FB memories feed and I cried again. I followed the link and have just read “Too much information” and am close to tears again. Both you and Beatrix have a way with words. My son was diagnosed with “sensory integration dysfunction” when he was 8, and with occupational therapy many of his sensory and coordination issues resolved, but as a qualified Speech and Language Therapist in the UK, I always knew there was more, and having worked with Aspergers and Autistic children in the UK, felt there was an aspect of that to him. We moved to the US when he was almost 2 and have lived here ever since. That is where he got the Sensory Integration Dysfunction diagnosis. My husband fought it at the time, and getting some extra help at school. It was difficult. My son is now 21, and is at the University of Kent in Canterbury, England and close to graduating. He still has times when the world gets too much, he gets overwhelmed with his emotions, noise, smells, touch, but has learned to calm himself down for the most part, and is looking after himself. I get messages when things do become overwhelming and am at the end of the phone, internet to message or video-chat. It’s hard for me.
I hope that you both keep writing about the challenges and helping others become more aware, understanding and accepting. My son is doing well because he feels more comfortable in his own skin in England, people are less judgemental than over here or maybe a bit more eccentric.
Sorry this is so long, I just wanted to know how much both of you have touched me, and that you have made a difference.

Thank you so much, Catherine, I really appreciate you taking the time to comment…

I feel my journey of writing about autism has come to a happy or perhaps more a peaceful end however I am encouraging Beatrix to keep expressing herself and sharing her thoughts and feelings…

There are too many “autism mum” voices deafening out the voices of autistic people. Some of them I feel harm the progress of Autism acceptance… all parenting can be hard, devastating, frustrating.

I’d like to think I was one of the “better” voices but I feel over the long term all those bleating autism “mum’s army” voices meld into one noisy cacophony…

We should all stand quietly and to one side and let our children’s voices be heard. Autistic people are more than capable of expressing themselves and with more honesty and accuracy than we could hope to achieve.

My challenges are nothing compared to Beatrix’s challenges, I don’t want people to empathise with me over her (which I feel they tend to do)…